I want to present a well-rounded picture of support needed for autistic adults, but I got almost no input from parents when I asked for it. The highly-able autistics who have jobs and take care of themselves with relative ease say that they understand the need for services, but have no idea how services should look or be organized. So the written parts of this presentation is mostly a picture drawn by people somewhere in the middle of the autism spectrum who can understand the need for help but have the ability to put their thoughts into email to me.
I was diagnosed as autistic about 1950. I have never had any services. In fact, no one in my family ever knew about the diagnosis except my mother and I, and I didn't understand what it meant until about 5 years ago.
Ten years ago I was trained as a Peer Counselor, and worked in supported housing for the mentally ill and developmentally disabled. At the same time I was working as a tutor in the Disabled Students Office of a community college. Since then, I have spent years operating and taking part in chat rooms on the internet used by people with autism living all over the world. I have on-line autistic friends, real-life autistic friends I met through the internet, and my Life Partner on the spectrum, who I met through the internet. So, in my own way, I am an expert and qualified to have an opinion about adult services.
As a support worker, I found that I could be the most help with other people "like me." That is, people who tried hard and couldn't understand their rejections and failures. Looking back, I see now that many of them were actually on the autism spectrum, not simply mentally ill (most of them were "only" depressed) or somewhat developmentally delayed. So I know that the insight I had from my own many learning disabilities helped me to find ways to teach those patients how to improve their coping abilities.
Some parents, too, develop amazing abilities to see the needs in their children and other autistics, and can learn to be excellent support workers with the right training.
There needs to be some kind of certification that aides to autistic adults have an understanding of autism and will respond to their autistic employers appropriately. Parents and others on the spectrum are a wonderful resource of potential workers because of their background knowledge. Also, part-time work in support could help the self-image of adult autistics and add to their incomes if they have only part time jobs and Disability. It would also be a means for them to learn more about their own disabilities and how to compensate for them. Learning of this type enriches the lives of the workers as well as those they support.
One aspect of support work at all levels should be to "spend time with" autistic people. There is a lot to be said for simple "companionable silence," watching videos together, taking a walk together, not forcing any kind of special effort. Since inability to make friends and arrange social connections is a prime symptom of autism at all levels, the need for comfortable social connection is quite probably a prime need at all levels. But this connection needs to be done at the autistic person's level - many times nonverbally.
Autistic people do not necessarily "plateau" at any particular point of development. Any support services should aid personal growth and allow for increasing responsibility for the self over time. Autistic adults will reject inappropriate services as they mature. They have a right to choose their own pastimes. They need to be engaged in learning and doing things they enjoy. Insisting that everyone engage in activities that are "age appropriate" isn't OK if the autistic person PREFERS to spend time trading legos on the internet. Insisting that a room full of autistics color in coloring books is not appropriate for their age or their interest, in most cases. Piling everyone into a van and riding around as an "activity" is not appropriate. People have lives and they need to be able to pursue the interests their lives are involved with.
Communication does not mean speech. An autistic can communicate wanting to do something, or rejection of the activity, without speaking sentences or even words. Autistics who can learn ANY form of communication - picture, typing on a screen, typing pictographs - should be provided with whatever they need to communicate as well as possible. There should not be any question of how to pay for the materials required. Anyone who imagines suddenly becoming deaf/blind and unable to communicate the simplest desires and needs to caregivers can realize how frustrating and demeaning it is to be a human without communication and without consideration by other people.
Has anyone ever thought how ridiculous it is to use a test that measures aptitude in scholastic achievement to measure disability in daily life? That's what we are doing when we base all services on the I.Q. test.
If a person has a diagnosis of neurological impairment, it doesn't make sense to assume that the impairment won't affect him just because he is able to memorize large amounts of data or learn to process math problems correctly. We know that, by definition, the neurological impairments work against success at the same time as the aptitudes work for success. There is a big logical/rational break in the thinking here.
Who should receive services? At present we have a system that more-or-less warehouses adults over 22 who have I.Q.s below 70. It totally drops in a sink-or-swim way adults over 22 who are on the spectrum but didn't have services earlier in life if their I.Q.s are above 70. With current budget cuts, those diagnosed and receiving services before age 22 may also find themselves out in the cold, with the possible exception of nursing home services. The nursing home industry is powerful enough to keep the government wasting money on them when cheaper, friendlier housing would do better.
Another thing that needs correction is the connection between income and medical care. Many or most autistics will turn out to have biologically-based medical problems and need care for those in order to work or even survive. At present, an adult autistic who has retired on SSDI Disability doesn't get medical coverage for the first two years, and loses it if his income goes above a certain very low level. But people with auto-immune disorders, celiac disease and the like aren't eligible for regular health insurance. So we find that we are locked out of the workforce for fear of losing our medical care if we have any additional income at all. We are stuck: not enough income to pursue hobbies or volunteer work, and no way to feel creative or like we are contributing to society. Try being in that position with an I.Q. of 160 and great creative energy! It's torture.
Also, undiagnosed adult autistics usually don't realize what their problem is until they have wound down from high-paying jobs, to lower-paying ones, to chronic unemployment. Then they receive very little on SSDI when they finally apply for Disability on the basis of the physical problems. They can't afford the deductibles and copayments for Medicare. They can't afford BOTH rent and food. Remember, these are hard-working people who have worked for years but been unable to succeed or save money for retirement. Many burn out at 45 to 55 years of age - far too young to look to social security retirement to save them. Are there hundreds of thousands of undiagnosed or under-served Autistic-Asperger's adults "out there" in the world? Probably. I can't say how many of today's properly-diagnosed children will grow up to have no services, but the state of our present budget deficit appears to me to point the way to little improvement in the future. These are people who can be productive at a much higher level than "Disabled," or "Grocery Carrier," or "Homeless." The waste in productivity is destroying their lives and bringing down the overall level of health and welfare in the population. These are motivated individuals who will struggle to overcome any hurdles they can understand and cope with. If we have services for the underprivileged in ghettoes who don't want to appear nerdy and so do not complete school, why shouldn't we have services for the "under-enabled" so that they can work and contribute to their own support?
I want a dialog. I want these issues out in the open and hotly debated. I want people to be excited about this issue and to ask questions and discuss it in the short time we have available.
I want to see able people working sincerely on drawing up solutions.
Copyright © 2004 Patricia E. Clark